Hi all. I’m sort of new to the forum. This is my first post. About three months ago, I started experiencing neurological symptoms and muscle issues. After going to several different doctors, including two different neurologists, I was finally tested for B12. It turns out that my B12 was 95. I was also tested for vitamin D, which was at 5.1. Since then, I’ve seen a number of different websites that discuss the symptoms of vitamin D deficiency and B12 deficiency. (I believe I read somewhere that there is a connection between the two deficiencies.) It seems that a number of them overlap. Since I’ve started my treatment— B12 shots and vitamin D supplements—about two weeks ago, I have noticed some improvement in some symptoms. However, several remain. I know it is a long road back. But I’m just curious to find out if anyone has had both vitamin B 12 and vitamin D deficiencies and if it is clear which of the two was causing problems like muscle weakness, muscle pain, muscle soreness, etc. I am also interested in hearing any recovery stories or success stories after treatment. I would appreciate any advice or suggestions you may have. I thank you in advance.
B12 & Vitamin D Deficiencies - Pernicious Anaemi...
B12 & Vitamin D Deficiencies
Thank you so much for your response. Always nice to hear from others about their journeys.
Yes, I am from New Jersey. When you were here did you get a chance to visit our state? And yes, I will add USA to the posts, as you advised. Thank you again.
When I was found to have B12 deficiency, it was not long before I also found out that I had vitamin D deficiency (-osteoporosis of the spine) , low folate and low ferritin. Thyroid okay but struggling a bit, unsurprisingly I suppose, given all that was going on. These are all the ones I'd get checked, as they are fairly common. If your B12 deficiency is due to pernicious anaemia, you might also have other auto-immune conditions such as psoriasis or vitiligo.
A lot of the vitamin deficiency symptoms overlap. Vitamin and mineral deficiencies will often have some general symptoms in common- fatigue, muscle weakness, low mood, irregular heartbeat. Then there are some other deficiency symptoms that are specific to the function of the vitamin or mineral- like poor night vision with vitamin A. The B vitamins are more difficult to disentangle, because they have some similar symptoms, are wide-ranging, and simultaneous B deficiencies can occur.
Nails and hair - quite visible deficiency issues - can be inspected by GPs or consultants (but often aren't). They would be looking for :
If your fingernails have no moons, have vertical ridges, splits or dried blood (black lines), are delaminating or surface is cobbled.
If your hair is frizzy, splitting and falling out, either thinning and revealing scalp, widening parting, receding or even coming out in clumps.
Even these symptoms are not always seen by medical professionals as belonging to B12 or even the B vitamin group. My GP thinks that my hair loss is due to low ferritin or folate, so put me on a 3-month supplement of both. It did improve, along with other symptoms, but since I was also getting B12 injections and prescribed vitamin D, it would be difficult now to attribute improvements accurately. I have no real wish to experiment by elimination now !
Still, these immediately obvious visual clues are useful tools for GP to at least determine your general state of health at a glance- especially if you stick to one regular doctor.
Recovery for me has been slow - even folate and ferritin took a couple of years to stabilise at good levels- and even with frequent B12 injections, I can have minor setbacks. Nowhere near as bad as I was at my worst -and certainly a lot of my symptoms are now manageable or even rare.
We are all very different, though. Symptoms vary, in frequency and severity and range and so this is also true of treatment required and recovery time, even within the same family.
I would start by seeing results this quickly as a really positive sign that more improvement is highly likely. Keep an eye on what is happening, particularly with neurological symptoms.
It can be useful to keep a daily chart or diary of symptoms, at least until you are satisfied that you are being treated correctly and at a frequency that works for you. You might want to give your doctor a list of symptoms to keep on record which you could review later.
Thank you so much! You have answered all of my questions thoroughly. I have begun keeping a journal of all my symptoms, supplements, improvements, and setbacks. I know it will be a long journey, but at least I am on the right road, I believe.
Believe you are, NJPoet - best of luck.
Thank you. You as well.
"If your fingernails have no moons, have vertical ridges, splits or dried blood (black lines), are delaminating or surface is cobbled."
Cheryl, is this due to a specific b vitamin?
I feel that I am missing a piece with my recovery and this made me wonder.
Thank you.
After I looked on Google images ("B12 deficiency and fingernails" or something similar), I felt a whole lot better about my own nails. Some are quite horrific.
For me, this repaired itself quite quickly once injections started. Does reappear, but never been as bad as it was and I never get dried blood in the vertical cracks now. I've got moons on thumbnails at least. Small yay !
Only once has any medical professional ever obviously checked my nails - a haematologist - so although this is a fairly common and easily recognisable symptom, it perhaps is not so familiar to GPs and consultants. At least not any more.
If B12 deficiency can affect any cell in your body, hair and nails would be a good place to start, for a time-limited GP. Not really going to happen over the phone though !
What are you wondering, Litatamon ? What are you missing ?
Can we help ?
Thanks Cheryl.
When I first started b12 injections I thought there was another separate piece missing, so to speak. There was - a vitamin d deficiency. It was very low.
I am a year in and still feel like I am missing something, another piece. But possibly it is simply disbelief that I am still healing from b12.
Thanks for asking.
What all are you taking & how often? What have you noticed improved?
Vitamin d, after getting it to the lower end of normal, I am taking 2000 iu/ a day in spray or drop form. I take it in a weekly amount because for some bizarre reason I feel mentally off with vitamin d supplementation. It should be the exact opposite feeling. So I do 14 000 iu/once a week.
Vitamin B12 - very early on I decided to self-inject. It was because as I went from loading towards once a month (our protocol in Canada), I started to regain symptoms. I had a tremendous amount of neurological symptoms so I went every other day per protocol with neurological issues until no improvement felt. My doctor did not believe in that and gives the gist that she thinks a b12 deficiency is only fatigue, even though I have tried to further her knowledge so to speak (insert big fat sigh).
That came to pass in February, the no further improvements. So I headed back to once a month. However, at the same time I was under a great deal of personal stress and a naturopath told me she feels stress can impact b12. So after a while I went back to twice a week (cyanocobalamin). And decided to stay around there until my personal situation changes.
About a month ago I went to once a week. But have felt some issues return, so I might revisit yet again.
I had probably over thirty symptoms before diagnosis. About 80% of them went during loading. I would say these remain at varying frequencies -
*fatigue/falling sleep sitting up (something that is foreign to me)
*at times muscle weakness
*hitting a wall after too intensely exercising or too much interaction
*missing words while typing and not seeing them while editing
*word finding at times/brain fog
*Some tingling in hands especially while biking
All the best to you NJPoet.
Some people bounce back quicker than others, which I guess is why this "1-every-3-months" theory was always going to make life very difficult for many. And, let's face it, we know it to be theory because it has been reduced over many decades from 1 a month, 1 every 2 months to 1 every 3 months to 1 every 2-3 months (if you're lucky) ..... none of these changes have been due to research, no-one seems to know why the changes were made and who by, and worst of all, no-one ever seems to have monitored the detrimental effects this reduction might have.
Which leads to those with B12 deficiency unable to manage on this arbitrary frequency being labelled as "hypochondriac" or "addict" - as opposed to anyone questioning why any of us would be the same and require the same treatment.
I have given up on "symptom-free" as a goal. Instead, I have worked on keeping symptoms as mild, infrequent and manageable as possible, while reducing commitments and stress wherever possible. For me, that has meant having an injection every three days and taking voluntary redundancy. It took over two years of self injecting every other day for me to get this far. I didn't manage to succeed with a phased return to my previous position at work- but gave it a damn good try.
Keep your eye on vitamin D, folate and ferritin, maybe thyroid too -and just keep believing in your own recovery. It is difficult to do this when so many medical professionals (not just in primary care) do not believe in the severity of B12 deficiency and do not recognise a wide range of symptoms that are all too familiar to us, which is why so much time is wasted looking for a "worse" condition to blame !
I believe you should continue with the vitamin K, although my GP said "if you needed vitamin K2 with vitamin D, the NHS would have supplied it as well". I use a spray form (when I can remember it ).
Keep going, Litatamon .
Thank you so much for that post CherylClaire. It means the world to me. And to many others reading as well, I suspect. So appreciative.
While you lived here in Maryland did you get a chance to try our crabs?
That makes you a true Marylander!
Yes, I received some very beneficial information from Cherylclaire.
Yes, and don't forget the cold beer!
Hi,
My path is very similar to yours. When I found my b12 deficiency it was 103. I knew intuitively that something else was wrong. And finally got a vitamin d reading (7.6 in your measurement - I am in Canada).
So as everyone else is saying it is very hard to differentiate between the symptoms.
But I do know that my leg weakness and bone aches were definitely due to the vitamin d deficiency. Both did not improve with the initial b12 shots at all.
Thinking that the muscle aches were as well but unsure.
My sense of taste also came back with starting the vitamin d, but can't be certain it just took time with the vitamin b12.
When you are that low in vitamin d one must use a very aggressive approach with supplementation. And it needs to be monitored ie. Rechecked at three months.
I got myself just above normal range in about five months with the vitamin d. Originally I took it with vitamin k. Now I am not with the vitamin k - I can't afford all these supplements. I was instructed to take 10000iu a day for the first month and 5000iu a day for next two months and then retest. Covid hit at that exact time so I had to scale way back to be safe and didn't get tested until five months.
I am one of those weird people who feel really awful on vitamin d supplementation. It makes no sense as it affects my mood, when it should be improving one's mood. But I have pushed through regardless as my legs had no strength in them (yet no atrophy, muscles still there) . They are a ton better but not where they should be. Yet!
Fatigue is still an issue for me, unfortunately. And I am exactly a year out from b12 diagnosis.
But I had about over 30 symptoms originally and I would say at least 80% of them are gone so I need to be thankful. Some days it is easier than others.
All the best to you.
Oh and one weird symptom that I believe fluctuates with my vitamin d - severely dry forearms.
It is beyond bizarre. I have never had dry skin in my life, don't even use moisturizer outside of my face, and suddenly I had these crazy dry forearms.
Forearms only.
I *think* it is the vitamin d - unless someone here has more insight.
.......and you, NJPoet ? How are you faring ?
Cherylclaire Thank you for asking. I have seen a steady improvement since I started treatment. I can see in a dozen small things that I am better. However, there are days—like today—when I feel like I’ve regressed some. Particularly, muscle weakness & twitching today. (Haven’t had that in days.) I’m trying to figure out what it could be. I did some running around yesterday, so maybe I did too much. I’ll be staying in bed all day. Hopefully, I’ll rebound. I have heard that some people experience three steps forward two steps back in their recovery. Maybe that’s what I’m going through today. Le sigh.
In the beginning, probably for the first ten months, if I did too much (usually exercise but could be any physical work or too much social interaction) I would be D.O.N.E. done for three days straight. Almost like clockwork.
I would always get this one sign that I would know it was coming, a pull in my mouth. Hard to explain but like a dryness and a pull at the same time.
At some point I stopped looking for any reason and just accepted my body was healing and it was saying "too much".
And weirdly enough I accepted it so much that I wouldn't let it stop me from exercising or doing too much - one has to live. I simply accepted the repercussions.
It is a lot better in the last two months. Today I am feeling it, but these moments are a lot fewer.
Hopefully it helps to hear that these frustrating issues do improve.
------------
So wonderful to hear about your progress NJPoet.
Quelle domage.
How frustrating - but small steps will get you there.
If you haven't had twitching for days, I would take that as a really good sign that you have the potential to ditch this symptom, given the right conditions.
I was very lucky in that I never had twitching.
My most head-turning symptom was probably the aforementioned sigh, or to be precise, loud uncontrollable overlapping gasps for air that made others jump. Then stare. Then laugh when I smiled and shrugged. Think they assumed it was a form of Tourette's.
I got to accept that every time I was in an airless, windowless place for too long, it would start up: supermarkets, car journeys, staff meetings, consultants' waiting rooms etc. Not so frequent or severe now, but then right now I'm not doing any of those things.
Yes, in fact I am - I went to the dentist a couple of hours ago ... didn't happen !
Another good reason to record symptoms - you forget that they're gone.
[Appalling memory still persists, it seems.]
Cherylclaire Thank you for your inspiring words. It’s true; when those symptoms disappeared, it was so encouraging. I have to be grateful that many other symptoms have either disappeared or improved: restless legs, memory issues, speech issues, anxiety, irritability, chronic headaches/head pressure. All gone or almost gone. The stubborn symptoms seem to be the muscle weakness, cramping, twitching. (I also have a severe vitamin D deficiency, so that may be a factor as well.) As for my weirdest symptom, I was having issues typing for some reason. I had to use voice-to-text or dictation apps for weeks. Now I’m back to typing again. So, I don’t want to do the “woe is me” thing. But when I have a bad day, I just long for the good old days when I was myself. Patience is key.
In the beginning, this can be overwhelming and frightening, fear exacerbated by the growing realisation that GPs do not know much about B12 deficiency, and cannot find the consultant who does. The truth is that we are on our own with this - and never more so than now. On the other hand, that gives us a certain freedom, and there is a wealth of knowledge right here. We can learn from those who have lived with this for longer.
Less frightening, then.
You are your own experiment - and if not exactly as was, still unique. It will take a while to find out what works, whether it always works, what changes things, what maintains the status quo. What you are willing to live with and what can be fought off.
So patience, yes initially. It is the first key. Don't worry if it starts going a bit wrong - you can get back to where it was going right again, and you will have learnt something about current limits. Progress has been mainly promising, from what you have said.
I'm not about to claim that I'm the same as I once was. It would be a lie. There are things that I can't do now that I used to find easy. So I've had to let some things go - but that has made space for other things. Things I can do.
Acceptance is perhaps the key to the next room. It took me a long while to realise that this is not the same as giving up- and is not a betrayal of my former self.
It's just change.
Are you really a poet ?
Cherylclaire A poet indeed.
What type of doctor should I see for b12 deficiency?
I saw a neurologist who was knowledgeable about B12 deficiency. However, I went to him initially because I was experiencing neurological issues. Almost four months later, I have improved quite a bit. It’s still day by day. In it for the long haul.
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